hi I had a echocardiogram last week and told I have aortic valve issues and will need surgery . I had a dizzy spell after walking too quickly and was checked out by my doctor who heard a murmur.
I will be seeing the cardiologist next week but wondered how others spent their time before seeing specialist? That is what you could do or not as told just take it easy and no bowling ( lawn) but can drive. Don’t want to make it worse but just wondered about just going to shop for food or coffee with supportive friends? Many thanks
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Hi, I had an aortic valve replacement 12 weeks ago, while I was waiting to have it done , I just carried on life as normal, walking the dog, meeting friends for coffee, light shopping etc. I just didn't do anything heavy or out of the ordinary..
I hope this helps, feel free to reach out if you need more info. You'll be an expert once you've had it done
I just read your blog and very interesting it was. It has given me more confidence to go through my two valve replacements. I have Mitral Stenosis & Aortic Regurgitation. A pacemaker was fitted in 2018 at the Hammersmith hospital and works fantastic as the low heart rate problems I was getting by doing anything moderately physical was frightening I was going down to 33bpm for just bending to do my boot laces up. But that part works very well now.
As you were talking about that you had the Bicuspid. Aortic valve, My Aortic valve is Quadcuspid. Not sure if that is even more rare?
My open heart surgery was delayed two years ago, because I had a Vitreous Haemorrhage in my right eye, caused by my long term type 1 diabetes which i've had for 50yrs. I'm now 63.
About 23yrs ago, I filmed open heart surgery in the US and was the most unpleasant thing I've filmed over the years of being a tv news cameraman and i've covered some nasty things over the years including conflict etc... doing this work. Having filmed the surgery at the VA, Boston, USA, had put me off getting this done as soon as it was possible. Psychological obviously, but now my mind has changed as I know things are getting slowly worse, as i've been told by the cardiologist and cardiothoracic surgeons.
I'm currently going through the stages, again of leading upto getting the surgery of the Aortic & Mitral valves replaced. Next week, I have an Angiogram one of about six i've had since all this discovering of my heart problems since the Pacemaker was fitted in 2018. The cardiologist said that the Mitral valve problem has been with me since birth in 1961. My mum never knew about it.
So at the moment, I get the breathlessness still, I do feel things in there are getting slowly worse as the tiredness, fatigue and lack if motivation seems to be more and some sort of funny feeling in the heart area mist days.
Along with my type 1 Diabetes i've had for 50yrs, my hba1c hasn't been great think it was 79 on last count; i've never found it essy to control properly being a location news cameraman has made it even more difficult I have quite a tough character I believe has helped me get through my health issues. I've not worked much for the past 3yrs, due to my heart health being what it is as camerawork is physically demanding. I don't smoke or drink alcohol. I also wear hearing aids, have pernicious anaemia (b12 every 3 months) and I have neuropathy in lower legs/feet/hands
Any advice with the unusual Quadcuspic Aortic valve and what risks I have with that and anything else would be gratefully appreciated.
Hi Chris, Crickey, you've got the lot! I don't know about quadcuspid valves but I know enough about medicine to know if you can imagine it, the human body can create it! I'd not heard of them until now. I wonder if there are ever more flaps!
It's great you don't smoke or drink. Do all you can to get your HbA1c down further if you can, whether by diet, or glucose monitoring and automatic insulin delivering gadgets if you can. Diabetes damages gradually and persistently if the sugars are high but the damage is often reversible if they fall to normal levels. If you're really fat then losing weight will help a lot. If you're just a bit chubby then don't worry too much as you won't feel like eating much post op and your body will use up that fat instead!
Respect to you for your filming work. I can't imagine how you can be looking through the lens whilst there's chaos, and danger all around you. I guess most of the time you only need short clips, though I assume you film a lot in order not to miss the drama.
An operating theatre is possibly a calmer atmosphere but I can imagine for most people open heart surgery isn't the best thing to be watching with some concentration, through the lens. That said, I quite wish I'd had a video of my surgery! That said, I was never that keen on any surgery as a student or junior doc, but that's more because I got backache and I couldn't tolerate hot environments for hours on end.
Hearing about your symptoms, I think, once you've got over the op - 6w after it, I'm sure you'll start to feel a new person. Good luck.
Thanks for speedy reply. Thankfully, i'm not overweight quite slim and eat reasonably healthy. I live on my own as the misses passed away 5yrs ago, I'm looking into the insulin delivery pump way as I'm not rushing around like I used to, as I was always concerned the insulin delivery pump would unclip off the belt or something when rushing around with the camera. Yes filming ratio is quite a wide gap to what actually goes out on the tv.
I've never heard of the Quadcuspid thing either until I was told about it by cardiologist & surgeon, very rare he said, may be rarer than biicuspid as you had.
I'm sorry to hear of your loss. Lean on family and friends around the time of your surgery. Can you get someone to move in for a while afterwards? A sternotomy is sore for a while and recovery is a bit tedious. I managed to read Papillon and watched a bit of telly - Palin in GBH! I also bought, second hand, before the op, an electric reclining old fart's chair which was great for snoozing in. I sold it on when I was more active. Facebook marketplace is a good place to look but they're heavy. I got the sellers and neighbours to do the heavy lifting!
I made myself go to bed each night even though turning over in bed is very uncomfortable for the first few weeks. Codeine helps but don't get hooked on it, and watch the constipation it causes - prevention is better than cure!
Badger people for a pump as you won't be rushing anywhere and it could really help you when you're recovering and once you have done when more active and trying to get fit again.
That's the bit i'm not looking forward to. The recovery part of the sternum healing and the. daily bowel movement necessities.
Since losing my partner of 25yrs, we don't have kids and there is no other family, i'm literally on my own. My neighbours are scattered around as I live in a very rural area and the nearest neighbour is just an hello, hi, weather, sorts of chats - the nearest shop is 5miles away and supermarket 12miles away and friends are really people from the past that I don't even hear from or see or send christmas cards to or anyone for that matter as I don't socialise or a member of a club or group as I find all that stuff draining.
As a global news cameraman, semi retired one, it is a lone wolf's type of lifestyle/career hence my quiet stress free lifestyle.
I will have to discuss post-op care with the nurses who specialise with this situation because I literally have no family or friends to help here. So not sure how they'll deal with this.
Other prob that worries me is the toilet ablutions when you need to do your daily bowel emptying and how all that works out as there is always pushing needs to be done and how much pain one will endure with that or even bursting the stitches or other damage to the heart through that necessary bowel movement actions.
Do talk to the nurses about your situation, if possible before your operation. They may be able to keep you in for a bit longer than they otherwise would. Consider whether you can afford to pay anyone to pop into you each day. Social services may know of local volunteers for this if you don't have connections with the community around you.
If you have a mechanical valve you are going to have to have warfarin blood tests so somebody will need to come to your house to do that as you won't be able to drive for at least 6 weeks. The hospital should arrange that with the district nursing team before you are discharged. Try to find out who will help you with warfarin dosing. Usually it's a pharmacist from your local hospital. In my case that was not the hospital that I had the surgery done in, and the hospital did not establish the link there, my GP had to, which is annoying because I had to get involved in instigating that. Really the hospital ward staff should have done that.
I encourage you to do some batch cooking, or buying in of ready meals if you can stand them. In the first week or two you won't have a huge appetite, and you won't be burning many calories, other than in the healing process. It sounds like you should bulk buy to get you through the time that you can't drive. Perhaps buy in long life milk, cereal, snacks mixed nuts and dried fruit if you can't get fresh. Can you freeze some loaves? Forgive me for teaching you to suck eggs - you're an international news cameraman!
I didn't have problems with straining as I was given intravenous antibiotics for a day or so post op and the laxative lactulose, so when I did need to open my bowels post op I wasn't constipated! I carried on with lactulose for a week or two after the operation, and still have plenty left over. I think prunes work similarly well and you can get packets of dried ones in Aldi.
I was able to potter about readily when I got home. Dressing and showering were all ok. I just had to do everything slowly and carefully. The biggest mistake I made in the early weeks at home was lifting things that were heavier than I should have. I suggest a 2L bottle of milk is about the limit for the first month. I moved heavier stuff and helped an engineer bring a new fibre-optic cable into the house! That set me back a few days. Have a rolled up towel handy at home too, because it helps to press it against your chest if you sneeze, cough or laugh. The nurses will give you one post on on the ward. In the States you get heart shaped cushion from the hospital!
To be honest I relished the time I had reading and watching telly and am grateful that now I've recovered I have normal life expectancy.
If you felt dizzy, did you sit down to recover? Try not to bend over like doing shoe laces up and stuff as that can bring on light headed issues etc caused by your heart dropping to well below 60bpm. If you can, take your blood pressure when you have another episode like this. Check your heart rate; as anything below 50 can be serious if you got heart issues.
I had all this myself six years ago, I ended up with a pacemaker, which is fantastic and my heart rate will never go below 60bpm because of the dual chamber pacemaker I've had since 2018.
However, though, I also have Mitral Valve Stenosis & Aortic Valve Regurgitation, both valves need replacing. I had a chance of surgery 2.5yrs ago, but an eye bleed (vitreous hemorrhage), prevented the open heart surgery going ahead, but i'm now going through all the pre op tests etc... so surgery is going to happen in the coming months.
Current probs I have are breathlessness caused by exertion of any sort, often very fatigued and lack of energy. I also have type 1 diabetes i've had for 50yrs and i'm 63. My suggestion is, let the hospital professionals do what they tell you to be right in your case, they're doing these things everyday, and good luck.
hi so an update , having lived in fear for last 2 weeks, met my cardiologist and she is lovely, and explained that as symptoms ( apart from ones I said ie really dizzy after fast walking ) are little and the heart is in good order and coping well with the stenosis, it was decided that no op needed but will be on 6 monthly check ups and can phone cardiac centre for earlier appointment if needed. I was relieved but now feel a bit down! Think because I wasted so much energy with worry before hand as echo scan person said op was likely! Hopefully now just be able to get on with life. Also mentioned that other procedures can be used before open heart surgery needed! Hopefully the less intrusive way will gain ground and be used for all instead of open heart! Stay well folks .
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I don't know about quadcuspid valves but I know enough about medicine to know if you can imagine it, the human body can create it! I'd not heard of them until now. I wonder if there are ever more flaps!
